ULGEA/ TEF/ VSD/ PDA/BE/ Paraesophageal Hernia/GERD/Nissen/ achalasia

Posted by sdeering20 @sdeering20, Mar 3 11:10am

Hello I am wondering if anybody else has a complex medical history that was born with Ultra Long gap Esophageal Atresia and Tracheoesophageal Fistula, bilateral pneumonia, a VSD/ PDA. When I was an infant I had the Nissen fundoplication, when I was 11 months old the doctors had told my parents that the Nissen had slipped. Unfortunately at that time my parents opted out of a repair surgery. I have had difficulty eating food my whole life, it doesn't matter what I eat it gets stuck several times in my esophagus. I am more than positive that my esophagus is so damaged that it has caused my LES to be paralyzed. I have Type 3 paraesophageal hernia with Barrett's Esophagus Stage C8-M8 with a short esophagus. I am truly wondering if there is anyone out there that might have something similar? I just feel like I'm all alone. I will be going to Rochester, MN Mayo Clinic for the first time this upcoming March 18th-March 22nd and then again April 3rd- April 9th. I will be having an evaluation appointment, blood tests, chest xray, Fluoroscopic Esogram, imaging exam,upper Endoscopy, Consultation with ENT, Exhaled Nitric Oxide, Pulmonary Function Test, esophageal Monometry, esophageal PH testing Monitoring, esophageal procedure, and then Consultation with Thoracic Surgeon. Also another question I have very poor hearing, I am wondering has anyone brought a device to record consultations and information instead of taking notes? Thank you for taking the time to read this.

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Welcome to Connect @sdeering20. That is certainly a complex history. I hope you find someone with similar issues on Connect. I think you are going to be in great hands when you are seen at Mayo. Their team approach is exactly what you need with all the medical issues you have dealt with throughout your life. I have been a patient there for almost 12 years for head and neck cancer, and I know they have prolonged my life. With a 30% 5 year survival, it was hard to have hope but maintaining a positive attitude is the ticket. My experience with ENT and Thoracic Surgery has just been the best, from scheduling staff to surgeons. I hope your team will develop a plan to improve your quality of life. I don't envy all of your exhausting tests, but it will be worth it in the end.
I also have poor hearing and always have my husband there to catch what I miss. Sometimes I will use a mini mic that streams into my hearing aid. I would guess that most MDs would be accepting of a recording device if it will enable better patient communication. Will you be coming by yourself or have a companion to help with listening?

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